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March 5, 2014 by Russell Stence, MA

From Adversity to Advocacy

Russell_Stence_headshot

Negotiating with terrorists.  That’s the feeling I came to have in trying to communicate and work with staff in a local acute psychiatric ward who had total control of my adult daughter, and I do mean TOTAL control.  This may sound like hyperbole, and perhaps it is, in a way.  Because I believe these people were, for the most part, well-intentioned.  I don’t doubt that some of them were even kind and caring. It brings to mind the following quote of C.S. Lewis:

“Of all tyrannies, a tyranny exercised for the good of its victims may be the most oppressive.”

If they actually were terrorists, I think it would have been easier.  In that case, I could have gone to authorities who would have readily collaborated to get her out.  As it was, there was literally “no exit” (believe me, I checked ALL possibilities) and I had to constantly be “walking on eggshells” in the effort to stay in the good graces of those who held the pills, the needles, the restraints and the electrodes.  I had to suppress the urge to scream at these nice people, although I did plenty of screaming (even bawling like a baby) on my own time.

She had once again fallen into the clutches of our local “world class” hospital.  The same one that, three years earlier, had subjected her to a “one size fits all” treatment that engendered a prolonged state of akathisia, preventing her from sleeping without heavy doses of benzos—and even then, not much.  The same one that tried alternately to “sweet talk” or strong arm her into submitting to electroconvulsive therapy (ECT ) due to her “treatment-resistant” mania—a mania that subsided almost immediately after they finally discontinued the offending medication, which I implored them to do during the first week of this lengthy hospital nightmare (based on her prior adverse reaction).

This time they almost killed her during the first three days with repeated doses (including forced injections) of Haldol, given despite having been told she was sensitive to medications in general and had previously shown paradoxical, adverse reaction to other antipsychotic meds.  And all this after she had been the model “compliant” patient, taking every last milligram of her prescribed meds every day for the past year except on the morning when she was brought in.  Yes, she entered the psych ward due to her “dysregulated” mental/emotional state, but this was nothing compared to how my wife found her three days later:  incoherent, incontinent and highly distressed, uttering surreal high-pitched sounds, lying naked under a sheet on the floor of the “seclusion” room!  A nurse on duty outside her room told my wife, “This should have never happened!”  He informed her that our daughter’s vital signs had been checked and that she was under close watch.  His comment, “We’re keeping her safe”, was in sharp contrast to what my wife had just witnessed.

Over the ensuing three months in this “world class” psychiatric unit, in which her brain was absolutely put through the wringer, she did not have what even convicted felons get (fresh air and sunshine—which, by the way, can be very therapeutic!) until very near the end.  Even in her very compromised state of mind, she initiated a court hearing in an effort to extricate herself from this nightmare.  I witnessed how in this process the deck is totally stacked in favor of the hospital; they can do virtually anything they wish to a patient and have it glossed over as “clinically appropriate”.  After our repeated requests, she was allotted some supervised time in a courtyard within the hospital complex.  Thankfully, she survived her “treatment”.  Although as I write this she has made great strides in recovery, she still bears the scars of this and previous torturous “treatments”.

But let me back up.

Over the course of my professional life as a school psychologist, I witnessed the increasing diagnosis of mental illness in children and the increasing prescription of psychotropic medications to address the emotional and behavioral difficulties they struggled with.  Talk of “chemical imbalances” in the brain became prevalent and this was often mentioned at meetings with parents, who were encouraged to consider medications just as they would if their child was diagnosed with diabetes.  I remember, after attending a professional conference in my areas by Russell Barclay (a leading proponent of medication for ADHD), invoking the research he presented about the efficacy of stimulant medication in meetings with school staff and parents.  I may even have used the “diabetes-insulin” pitch myself on occasion—I’m not sure.  At any rate, the favorable view toward medication promoted by the “experts” was buttressed by reports from teachers and parents about the “night and day” difference in a particular child after starting medication—improvement, of course.  However, we would also hear at times from parents and teachers of students who became “zombie-like”, or MORE hyper, or noticeably sad/tearful or more aggressive and irritable after starting on medication.  I, along with many of my colleagues, was becoming more and more concerned about the increase in frequency and severity of behavioral and emotional difficulties in the children referred for evaluations, often very young ones.   And the ever-expanding use of psychotropic meds, sometimes very powerful antidepressants or antipsychotics prescribed “off label” (not researched and FDA approved for children) was unsettling.

But it took the “up close and personal” experience of my own young adult daughter’s severe emotional/mental health setback during her freshman year in college to truly awaken me to how error prone, injurious and utterly demeaning the “mental health” system can be for some people.

Now, I need to take some ownership here as a parent and as a psychologist who should have been better informed about some of this to begin with.  True, we encouraged her to see a counselor on campus (which she did) and did not immediately resort to medications when her anxiety and depressive feelings mounted.  But when these problems continued to seriously interfere with her studies, we had her come home and see a doctor who quickly prescribed anxiolytic and antidepressant medications.  He was helping us out.  Our daughter had always been an excellent student and we thought some medicine might help get her through this “rough patch” and finish out the school year successfully. So we sent her back to college with her pills.  Extremely naive on my part.  She took only the anxiolytic, a benzodiazepine, and seemed to be okay—but still unable to do her course work.  However, when she stopped the medication “cold turkey”, her behavior, emotions and thought processes deteriorated and before long she ended up on the psych ward in a local hospital.

To be honest, I cannot say with certainty that she would not have had a similar “meltdown” if medication had not been introduced.  People today and in the past have certainly been known to experience such episodes absent of any known drugs, legal or illegal.  However, I have no doubt about the very deleterious effects some psychotropic meds have had on my daughter; furthermore, there is growing evidence that they cause rather than correct chemical imbalances in the brain.  People generally know of the dangers of street drugs, but are all too often uninformed or misinformed about prescription drugs.

As horrific and gut-wrenching this has been, it has given me a whole new outlook and zeal to advocate for those struggling with mental and emotional extreme states, and their family members.  As I looked further beneath the surface of the societal narrative about the great advances in treating mental illness, and saw firsthand just how horribly wrong things can go, I knew I had to be part of the effort to “get the word out”.

I’ve conducted many psychoeducational assessments and reviewed thousands of psychological and psychiatric evaluations in my role on the Committee on Special Education (CSE) over the years.  I’m quite aware of the often very subjective nature of psychiatric diagnoses.  Yet once a diagnosis is made, it is often given the same weight as a diagnosis of diabetes or liver disease–ironically, two illnesses that frequently result from the medications prescribed to “correct the chemical imbalance” presumed to be at the root of the mental illness diagnosed.

I don’t doubt that something may very well be amiss with brain chemistry when someone is in an extreme mental/emotional state.  It’s just that there is no conclusive evidence that such states are CAUSED by a chemical imbalance.  Many people, including most mental health professionals in my experience, find this hard to believe.  That’s an indication of how thoroughly and firmly entrenched the “chemical imbalance” theory of mental illness has become.  However, just this past year, David Kupfer, Chairman of the DSM 5 Task Force, wrote “We’ve been telling patients for several decades that we are waiting for biomarkers. We’re still waiting.”  Thomas Insel, Director of the National Institute of Mental Health (NIMH), got in “hot water” with the American Psychiatric Association (APA) for stating “The weakness of the manual [DSM 5] is its lack of validity….Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure [my bolding].”   Unfortunately, this knowledge has not filtered down to the “rank and file”, and there seems to be no serious effort to dispel the false belief that mental illnesses have known biochemical causes.

Even when symptoms reduce after medication, this is not proof that those symptoms were primarily caused by a chemical imbalance.  There may be a very real “life imbalance” at the root.  It is known that stress, lack of sleep, physical illnesses, nutrition, ingestion of drugs, etc. can and do lead to alterations in brain chemistry.  So we could certainly give a sleep-deprived person in the midst of a psychotic episode certain medications and see those symptoms abate; however, I think we would all agree that helping them get some sleep would be a much better “intervention”!  A teenage kid struggling emotionally with his parents’ divorce might “feel better” on an antidepressant (at least initially), and maybe do even a little better on the SAT if you throw in a stimulant medication.  On the other hand, there is plenty of evidence that such meds could result in mania, aggression or suicide.  How much better, both in the present and long term, to prescribe a regimen of appropriate counseling, peer support, respite (even delaying college for a year…gasp!), etc.

Are psychotropic medications always wrong?  That’s an extreme position that I cannot honestly endorse at this time.  I’ve known of many cases, personally and professionally, where people have reported benefits with no significant “down side” to medications.  Unfortunately, however, I believe this actually contributes to the problem of over-medication, especially in the context of the overly benign and incomplete information people usually get from medical professionals.  Mrs. Smith sees and hears how well Mrs. Jones’ son Billy, who has been diagnosed ADHD, is doing on medication and thinks it may be a good thing to help her daughter Megan.  Unfortunately, it may have a very different effect on Megan and could become a “gateway drug” for additional diagnoses and medications—ones that may prove very hard to discontinue due to withdrawal problems.

We often hear talk about the many people struggling with undiagnosed mental illness, and that it’s “such a shame” when treatment is available.  But I say, beware the psychiatric diagnosis!  Question it!  If you do accept it, be careful about embracing it!  Recognize it for what it truly is:  a very tentative, hopefully educated “guess” that must continually be evaluated and revised against ongoing “on the ground” observations.  Once a psychiatric diagnosis is made, a prescription for medication is almost always soon to follow.  Despite all the talk of various therapies, nutrition, social support, etc., the reality is that the medication and supposed “chemical imbalance” being corrected tend to trump everything else.  “Compliance” with medication is at the forefront.

More often than not, patients don’t have access to non-drug treatments.  Quite often psych meds are prescribed by very busy general practitioners who have been “informed” and courted by pharmaceutical reps.  I share the strong skepticism of many others about the fairly recent “discovery” of a new childhood disorder, “pediatric bipolar disorder”, and the astronomical rise in numbers of kids so diagnosed.   The even newer addition of “disruptive mood dysregulation disorder” in DSM 5 is also troubling.   I believe Robert Whitaker in “Anatomy of an Epidemic” raises very compelling questions about the correlation between this and the increasing prescriptions of stimulant and antidepressant medications to children.  His analysis resonates with my personal and professional observations.  I’m also concerned about the expansion of other diagnoses, some of which are dubious to begin with.

Especially after witnessing with my own daughter how thoroughly unscientific, error-ridden and injurious the mental health system can be, I ALWAYS advise parents and students themselves to be circumspect when it comes to psych meds.  Keep your eyes fully open.  Remember what you or your child was like before you started the medication, and what prompted you to take this route.  Trust your own observations.  Don’t be afraid to question the professionals.  You know yourself/your child better than they do.  If troubling symptoms appear after meds that were not there before, don’t let yourself be talked into believing this is “evidence of an underlying disorder”; that you necessarily need to try a different medication or add another one; realize that you have the option to STOP the medication, and that responsible professionals should help you do that gradually.

I’ll end with a more positive, true story (details have been changed for the sake of preserving anonymity).  One of my co-workers, Joann, had a grandson, Brian, with whom she had a close, loving relationship.   She spoke very fondly of him and they spent a lot of time together, including on the phone.  He had always been a good student but started having difficulty in school during fifth grade and from the “bits and pieces” I picked up, things went steadily downhill to the point where he was placed in a “day treatment” program, and then ended up in a Children’s residential psychiatric program within the year.

Hearing about this and now being much more aware of the possible pitfalls of psych meds, I was concerned and talked with Joann individually to find out more about Brian’s situation.  Here is what she told me (as was confirmed later, with more detail, by Brian’s mom):

Brian’s grandmother passed away and he was being bullied at school.  School staff said HE had to deal with the bullies; they did not address the issue at all.  Brian’s mom, Lisa, sought counseling for him and the counselor soon recommended that he have a psychiatric evaluation.  He was seen by a psychiatrist, who diagnosed depression and prescribed medication, Prozac.  Lisa expressed concerns, having heard about the risk of suicide with this medication; however, the psychiatrist assured her that with Brian’s specific profile it should not be an issue.

Unfortunately, Brian’s emotional difficulties worsened and he started cutting himself.  The Prozac was increased, but his depression and cutting increased.  Additional medications were added; he then began having hallucinations and was hospitalized at a local child and adolescent psychiatric unit for a month.  He returned to school and finished out fifth grade, but was again hospitalized during the summer.  He returned to school in the fall on even more and stronger psych meds.  Before long he had a “meltdown” that resulted in a mental hygiene arrest and another hospitalization, this time for three months.  At that point, he was deemed in need of more intensive care and was sent to a residential psychiatric unit in a city about 60 miles from home.

It seemed quite clear to me that Brian’s difficulties had increased exponentially after he started on medication.  I gave Joann information to pass along to her daughter about situations where parents had been coerced and even forced to medicate their children, to their detriment.  However, with assistance and advocacy, these parents resisted and succeeded in rescuing their children from the ravages of inappropriate psychotropic meds.

In the residential hospital setting, Brian was placed on all different drugs.  When his condition was still not improving, a drug of “last resort” was suggested, which was described as having the potential adverse effect of increasing muscle mass around his heart and possibly even death.  At this point, Lisa not only refused to consent to this medication but insisted that he be weaned from ALL meds.  Hospital staff exerted much pressure on Lisa to continue with their medication “treatment” plan and even threatened her with a possible referral to Child Protective Services.  Lisa stood firm, allowing that she might reconsider it if he was still having major difficulties a month after medications were discontinued.

Lisa prevailed and they tapered Brian off all meds.  Within a month, in Lisa’s words, “My boy was back.”  No more psychotic symptoms and no depression.  He still had some anxiety, but had learned strategies to manage it.

Brian returned home, but since his local public school refused to accept him back he had to spend the last three months of that school year and part of the summer in a local day treatment program.  He returned to public school in the fall, with some special education services in place.  Those services were continually rolled back over the course of the year, he was moved into honors classes, and the following year he was completely declassified from special education services.

It has been over four years since Brian’s discharge from the residential treatment facility.  He is currently a high school student in all honors and Advanced Placement classes.  He is president of clubs at his school, on a sports team, has accepted and become comfortable with who he is.  He manages his anxiety and has been 100% off all psychiatric drugs since he left the residential facility.

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About Russell Stence, MA

Russ is a semi-retired school psychologist, having worked in the public school system in Rochester, NY, for over 30 years.  The embers of his growing concern about our society’s increasing use of psychotropic drugs, particularly with children, were fanned into full flame when his own daughter’s emotional and mental equilibrium faltered under multiple stresses during her freshman year in college and then took a drastic nosedive after such medications entered the picture.   Russ is in awe of the incredible complexity of the human brain and its amazing restorative capacity and resiliency with sufficient time, care and nurturance—but also aware of its delicacy and susceptibility to tinkering with substances that affect it in many unknown ways.  The intricate interplay between the human body, mind and spirit is also awesome, mysterious and beautiful.  Russ is concerned about the predominance of a reductionistic mindset in conventional psychiatry that lacks an empirical basis and fuels the aggressive marketing of psychotropic drugs, whose claims are overinflated and risks minimized.  He is committed to “speaking truth to power”; promoting honest, respectful dialogue; and working toward reform of a mental health system that too often seems to further disable rather than enable those who come under its “care”. He is a father of four and has been married to his wife Carol for 36 years.

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